Updates and Action Alerts

I guess I really have been neglecting this blog. I'm spending hours on Craigslist trying to find jobs to apply for that I might actually have a shot at. I started on my Nanowrimo project, but it wasn't really going anywhere so I've been focusing on the job hunt, going through the motions with DOR so they'll buy me a new hearing aid and looking for other resources for help finding a job, specifically help for people with a hearing loss.

I can't believe I never wrote about the Walk for Hearing! It was awesome. I met my goal of raising $500! We had a lot of young people show up and a I made a few new friends. The walk itself around the marina was pretty nice, but we didn't have the kind of visibility we would have liked. I mean, sure, it's great if we raised a lot of money for hard of hearing advocacy and support, but the walk was also supposed to be about visibility, especially for us young people. There were a bunch of sorority girls that showed up and I hope that we made an impact on some of them. We sat in a big circle and shared our hearing loss stories. Then we went to BJ's which was fun. It was an exhausting time, and now I've got to figure out something new to volunteer for! I did make some connections at the walk. I talked to someone from GLAD and they told me about the EDD program. It sounds a lot like DOR but better.I would hope they can help me with services faster than DOR, because I'm getting tired of sitting at home with my eyes glazed over Craigslist.

Another update! My friend Rhi, who got the Hear YA Now team together for the walk, has informed me of an important accessibility issue. Apparently the Disney/Pixar movie "Up" has been released to rental stores without captions or English subtitles. She told me that the DVDs bought at the store do have subtitles, though they are not very easy to get to. However, in a "marketing decision" subtitles were left out of rental copies of the DVD under the premise that they are "special features." I happened to see "Up" in theaters with open captions, though there wasn't a lot of options as far as showtimes go. That's always the case with captioned showings in theaters, as if me and my friends have no lives and can just go to the movies any time. Anyway, back to the issue at hand. It's not fair that deaf and hard of hearing people should have to buy the $20 version of the DVD when everyone else can rent it for a couple of bucks. We need to let Disney know that this isn't fair and we're not ok with it. I've been told the number to call and voice your opinion is 1-800-723-4763. Call the number in an outrage and let them know we won't stand for this. Even if you don't make the effort to call, boycott "Up" and don't buy or rent it until it is equally accessible to both the hearing and the deaf/hard of hearing communities.

NaBloPoMo???

Oh my goodness! I just found out about "NaBloPoMo" last night! So not only is November "national novel writing month" but also "national blog posting month" as well. I wonder if I can do both.... Is that an achievable feat?

Ok, I got it. My plan is to write a story from the perspective of a young hard of hearing girl writing in her daily journal. It'll be like Princess Diaries, except it will be a hearing loss journey rather than a royal journey. I'll make a new entry into the "journal" every day, and then I'll post about it here. Ah! I'm so going to do this! I haven't started on the NaNoWriMo project yet but I'm going to..... now!

Negligence and Story Ideas?

I am sorry to say that I've been neglecting this blog. I havent written in nearly 2 weeks. I've been busy trying to figure out how to get a job, how to raise more money for the Walk for Hearing, and what I should write for National Novel Writing Month. (Be prepared for more negligence as I embark on this literary endeavor)If you don't know what National Novel Writing Month is all about, here's the deal. The idea is that a ton of people across the nation and the world pledge to attempt 50,000 words over the month of November. I suppose the most common form is a novel, but I'm sure it can be anything you want; a screenplay or what have you. Of course, when I tell my parents about it or ask them for suggestions they say something like "I know, why don't you get a job!?" Yes, Mom and Dad, thank you for that brilliant idea. However, times are tough right now, especially for what Businessweek calls the "Lost Generation." That is, people between the ages of 16 and 25- like myself- who are being hit the hardest in terms of unemployment and detrimental long-term effects on careers. In other words, why not attempt writing a novel? It will give me something to do other than sit in my pajamas until noon with my eyes glazed over craigslist looking for anything I could possibly hope to qualify for in the writing/editing field. Besides, all the "real" writing jobs require samples of your work, and what have I got to show for 4 lousy years of college? A stack of hurried, BSed essays a mile high.

Anyway, back to the "hard of hearing young adults" issues this blog is supposed to be about. I've been trying to decide what to write about. I definitely want to try something that ties into the "young adults with hearing loss" theme. However, I'm not quite sure how I want to go about it. Do I want to write something fictional yet semi-autobiographical? I'd have to be sure I didn't make the fictional characters too much like the real people in my life. Should I try for a memoir type style? Should I write in the form of a journal, like Meg Cabot does in The Princess Diaries books? I'm not entirely sure. The good thing is that the main point of "NaNoWriMo," as it's called, is just to write! Get all your ideas out there. No editing. December and beyond can be dedicated to the cause of the perfectionist. November is for getting 50,000 words written, no matter what they end up like. Still, perhaps some of you other young adults with hearing loss might have some ideas of what issues I should address or what the best format for doing so would be. I'd like to hear any ideas you might have. Thanks

Exhausting Weekend

Last Friday, the 9th, we went to Deaf Night at the Block of Orange. We met some cool people from Cal State Northridge (known for its deaf studies program) there. My friend Rhi, the activist, got really excited and insisted that we go up to CSUN the next weekend (this past weekend). We ended up going at presumably the worst possible time traffic-wise (Friday evening) but it wasn’t too bad. I was, however, a bit frustrated with the trip as a whole. It was definitely fun in the end, but I spent money I don’t really have on a dinner I didn’t really like, and I had a hard time communicating with anyone! There was a large group of us; some deaf, some hard of hearing, and some hearing. Because there was so many of us I never knew what was going on in the conversation. I had to keep asking what was going on, but my boyfriend didn’t even know, because neither of us is very skilled at signing yet and a lot of our friends have slight “deaf” accents so I have a hard time with that. Overall, it was a long drive and a long night. I got home around 2 in the morning.

Saturday I was exhausted, of course, but there was a fundraiser for OCF-OCF that I’d been looking forward to going to. My boyfriend and I were wishy-washy about whether or not we had enough energy to go, but in the end we went. It was a casino night at the local Elks Lodge. My parents paid for us to go. We got free drinks, played black jack and such, and my boyfriend even won a poker set. It was fun. It was also very, very loud. There was loud music playing and the bass was louder than any conversation I could have possibly had unless I was screaming. I had to have my boyfriend repeat nearly everything directly to my hearing aid.

Both of these instances were ones in which I definitely wish I could lip-read/ sign better! Sometimes I feel like I’ll be in big trouble if I ever actually go deaf. I didn’t learn these skills naturally at a young age like a lot of my friends. I’ve decided to write this weekend off as a loss. It’s been a loss of actual weekend/relaxation time at least. I can’t wait for the Walk to come. At this point it’s partly because I’m excited to meet new people with whom I can connect and partly because I’m exhausted from work that doesn’t seem to be getting me anywhere. It will all be worth it when I make a bunch of new hard of hearing friends at the Walk, right?

SoCal Walk 4 Hearing

I’ve been trying to become more active in the Young Adult Movement among the hearing loss community for the past couple of years. For the longest time after I got my first pair of hearing aids I had felt major self-pity about my hearing loss. “Only old people wear hearing aids,” I thought. “The hard of hearing community is made up of grandparents and people who were born deaf,” I thought. That is, until the people in my lip-reading class (all at least forty years older than me) encouraged me to seek out other young hard of hearing adults. Since I set off on this journey a couple of years ago I’ve made some progress, though I still don’t quite see myself as a major leader in the young adult movement. I’ve made friends, and I’ve realized that each of us has our own story. Everyone’s hearing loss journey is different. I don’t feel so alone anymore. Some of the people I’ve met are older people from the HLAA. Some are young and hard of hearing like me. I’ve joined a social networking site specifically for hard of hearing young adults called Hearing Loss Nation (http://hearinglossnation.ning.com). I’m getting there, but something big is coming up that I think may have a major impact.

The HLAA’s Southern California Walk for Hearing will be held next month on November 8th in Long Beach. Certainly this is a great opportunity for the HLAA to spread its message of access, education and advocacy for the general hearing loss community. This year, however, it’s our turn as young adults to bring attention to our presence, issues, and needs.

Why is our presence at the walk important?

1. Visibility- Raise awareness about the impact and existence of hearing loss.
We are here (hear) now!

2. Support- Provide a space to share our common experiences in a world dominated by the black and white division of deaf and mainstream hearing.

3. Communication- Talk about issues with technology and the 21st Century Communications and Video Accessibility Act of 2009

4. Networking- Meet other young hard of hearing adults.

5. Advocacy- Speak up for yourself, your hearing loss community and hard of hearing people across the nation.

The Walk is a starting point for future discussion and collaboration on long term issues that affect today's young adults with hearing loss who are faced with rapidly evolving technologies that can support our needs. Taking advantage of social media networks and passionate interpersonal encounters with other young adults creates opportunities for us to merge our ideas to facilitate real, sustainable change in accessibility and communication technologies in education and the workplace. Please join us at the walk. The Hearing Loss Association of America (HLAA) is currently working on initiatives that will involve more young adults at the national level. Your donations will be funding these efforts in the state of California and at the national level.

I'm part of Hear YA Now, the young adult team. If you are interested in joining my team, or donating, go to: http://www.walk4hearing.org/ Under the list of “2009 Walks” find Long Beach, CA at the bottom and click on it. When the next screen comes up click on the foot print marked “join a team” and search for “Hear YA Now.” When you get to the team page click the link that says “join team” one more time and fill out the information on the pages that follow. You do NOT have to make a personal donation, but you should set a personal fundraising goal. If you would like to join our team, please contact either Team Captain Rhianon Gutierrez (rhianon.elan@gmail.com) or myself (mccal106@mail.chapman.edu) so we can send you more information and a basic fundraising letter to send to friends and family.

Identity

Recent charity events have got me thinking about identity and how I identify myself. I am a cancer survivor, but I’m also a hard-of-hearing young adult. Both of these affect me on a day to day basis, but the former has for so many years- and in such a subtle way-that I hardly notice anymore. It’s certainly part of who I am, but I haven’t had to deal with the day-to-day medical hassles for so long that it’s become trivial. Most people who knew me when I was a kid recognize me primarily as a childhood cancer survivor. Most who have met me since probably know me better as a hard-of-hearing young adult. I have been a cancer survivor for about sixteen of my twenty-two years. Of those, about fourteen have been post-treatment, so unless someone is a good friend of my family or has really gotten to know me, they might know me as a hard of hearing person but not as a cancer survivor. My identity as a cancer survivor was formed when I was far too young to understand the implications. However, my identity as a hard of hearing person is still continuing to develop.

As I grow older and more knowledgeable about the world around me, I’m also more keenly aware of how my hearing loss affects my daily interaction with others. Cancer comes in so many different shapes and forms that once someone is done with treatment it may no longer be obvious that he or she has had cancer. You may or may not have a hint about a person’s hearing status by having a few conversations with them, noticing that they wear a hearing aid, etc. Both conditions can be somewhat less visible than others. As I mature I think I’ve tried to make my status as a cancer survivor less visible and my status as a hard of hearing young adult more visible. It used to be quite the opposite. I was so open about my cancer diagnosis that I gave it out like any random fact. “I was diagnosed with a brain tumor when I was five” was as casual a thing to say as “I’d like to learn to swing dance.” I tried to hide the fact that I wore a hearing aid, but how long can you carry on a conversation with someone and hide the fact that you haven’t heard half of what they said? I was caught in a double “in between trap.” I didn’t fit in with the Deaf or hearing worlds. Even among the hearing loss community I was in between the elderly who had lost their hearing because they were old and the young people who had been born deaf. However, the more hard-of-hearing young adults I come across, the more I realize that we are a unique group, and among that group our situations are diverse. Thus, I’ve decided to stop trying to define myself as belonging to a certain group and work on the issues I find important to me as an individual.

Phone Messages

This will be a short one. I thought it would be appropriate to follow up the technology post with this. I'd established that phone calls are for the most part a thing of the past, or they should be in my opinion, for people who are hard of hearing. Anyhow, I've noticed recently that phone messages really annoy me. I will admit that I am guilty of long, rambling messages, so I guess I'm a bit of a hypocrite. The majority of people I know are not hard of hearing, but I know plenty of people who have the same sort of issues with phone messages as I do. Here are my top 10 phone message pet peeves in no particular order:

• messages left from a crowded public place with lots of background noise and chatter
• whether there's other background noise or not, wind blowing into the mouth piece
• messages left from a place that is supposed to be quiet so the person is almost whispering
• a bad cell reception that goes in and out as the person leaves the message
• people with heavy foreign accents giving important info such as medical results
• call-back numbers that are not left in a clear manner
• particularly ones left at the end of the message so you have to play the whole thing over
• most especially when the rest of the message is slow but the number is given fast
• when the whole message is given at lightning spead and thus incomprehensible
• messages that are so difficult to interpret that I have to resort to having someone else listen to them and interpret them for me

The last one is something I was discussing with a friend of mine who has cochlear implants. It really is frustrating as a hard of hearing young person to have to have another person interpret a phone message for you. Not only is it a bit depressing that you don't get the pleasure of hearing and "getting" the message yourself, but there are just some conversations you don't really want your mother hearing. Some messages are confidential. My friend actually said her biggest pet peeve was that people still leave her voicemails even though her voicemail message says "Please, don't leave me voicemails" for these very reasons.

Technology

Alright, alright. I've let another week slip by without posting. I need to try to write more often. Topics, topics, topics.... Hmmm. Well, something I tend to come back to thinking about a lot is my social life. How is it affected by my hearing loss and how is it affected by my introversion? One doesn't have to be hard of hearing to know that quality is greater than quantity when it comes to friends. I find myself hanging out with just my boyfriend a lot in recent months as opposed to going out with groups of friends. People say, "Hey, we need to hang out some time!" Then they get busy and never call… or respond to messages left on their phones. Things never get arranged. It may literally be months or years before we ever end up seeing each other. Sometimes I feel like I lack social motivation. I'm not the one to call, but is it because I don't like talking on the phone or because I'm afraid people won't want to (or won't have time to) hang out one on one? You'd think with all the ways we have now to contact one another we'd be able to keep in touch, make arrangements and work out our schedules. I admit to being a little addicted to things like facebook, e-mail and texting. Phone calls are a thing of the past, right? I mean, who actually calls people on their phones anymore when there are so many other ways to communicate? Older hard of hearing friends have suggested TTY before. I really don't like the thought of it. It seems like ancient technology. It's so slow. Besides, I wouldn't feel right using it, not for a private conversation. For those unfamiliar with TTY; you have a special phone that types out what the other person is saying onto a screen. There's actually an operator in the middle typing that out for you, so not only do you have to stop and wait for them in the middle, but you can't have a really private conversation. Today we have things like aim, skype, text messaging, etc. I really don't see why TTY is necessary at all anymore, unless you're 80 years old and a total technophobe.

I was just chatting with a friend about the phone interview I'd had. He seemed almost surprised that I was able to do an interview via telephone. When I asked why he was so surprised he said that he "never had any reason to think I couldn't use the phone, but he realized that he had never talked to me over the phone, so he wasn't sure." We went on to discuss how I feel about talking on the phone and about how most people of our generation feel about talking on the phone. I told him that I'm actually fine talking on the phone as long as it has decent volume control. He wasn't surprised when I said that every guy I've been on a date with up to my current boyfriend, every one of them "hearing," seemed less willing to talk on the phone than I am. Usually the only phone conversations we have go something like this...

Me: "Hey, I just finished dinner. I'm getting ready to leave the house. I'll be over in about half an hour."

Him: "Ok, see you in a bit."

... or vice versa. This conversation is so minimal it might as well have been conducted via text. Calling sometimes gives one a little more of a guarantee that you’ll actually get a hold of the person while the message is still relevant. Of course, that depends on whether or not they constantly check their phone for messages. Some people text back so fast that you wouldn’t think they’d had time to receive the one you sent them. We talked about how a lot of people our age prefer new technology to old, not just the hard of hearing. So I'm left with these questions: Do guys in general dislike talking on the phone? Is it just a sign that the times are changing? OR Are they all aware of how verbose I am and want to avoid a conversation like the plague?

Camp!

Sorry I haven't posted in about a week. I haven't had much to write about and I'd been preparing for camp anyway.

This weekend I went to camp with the Orange County Foundation for Oncology Children and Families (OCF-OCF). If the name isn't enough of a hint, it's a group for children diagnosed with cancer and their families. What made this camp special was that this was my first time going as a staff member rather than a camper. I don't have the best of memories, but I don't think this experience was really all that different from when I was a camper, except maybe that four of us got a whole cabin to ourselves. We had been going to June and September family camp ince I was diagnosed with a brain tumor in 1993 up until my sister and I hit high school and schedules started conflicting with band competitions and such. Before I knew it I was over 18 and no longer allowed to go as a camper, but I was too busy with school to go as a counselor. Now that I'm done with school I got my chance to go back.

I actually wasn't a cabin counselor. I helped out with the little ones too young to be in a cabin, the so-called "tiny tots." We'd have sessions of a couple hours where the parents could leave the kids with us and go do other activities. It was fun and the kids were really cute, but it got really exhausting. Not only was I pulling the girls around in the wagon and swinging them around at the Friday night dance, but I was also really straining to figure out what they were trying to tell me. You know how little three-year-old kids talk. Some of it I could just nod my head or respond "Oh yeah? Really? Wow!" to. Sometimes, however, they'd be asking me if I'd take them to go see the horsies, or asking if I wanted their juice box and it got a little frustrating as I tried to figure out what it was they wanted. My sister seems to think that I wouldn't survive as an actual cabin counselor: "What if a kid needs you for something important in the middle of the night?" She had the youngest girls cabin, so I guess she'd know, but we also have a kind of hostile relationship and she probably thinks I'm incompetent. If I had been in a cabin I would have had a couple of co-counselors to back me up and I could explain my hearing situation to the kids right from the start. I think I could handle it. The only way to find out would be to give it a try, right?

Anyway, I shared a cabin with the two ladies who have done "tiny tots" for the past couple of years and another patient who grew too old to be a camper anymore who was helping us out with the kids. We got it all to ourselves because the two youngest girls' age-brackets were combined into one cabin this camp. Each cabin sings a ditty before each meal, which is usually a version of a popular song with things about that particular cabin's day at camp mixed in. We never had to do any ditties at meals because our kids were too young, but we dressed them up for dinner, which was fun. I really had a hard time understanding the ditties this time around. I'd always had a little difficulty, but I couldn't even tell what most of them were about this time. Campfire was alright. I knew all but one of the songs they sang, and most of the skits involved a microphone, although I've always had a little trouble with those microphones. I was just hoping and praying that they wouldn't call me up during "chuggy chuggy" or the "elephant walk," which they didn't. Come to think of it, I don't think I'm very popular around there.

It's strange, but I feel like I'm only known by some people by association with my parents or family, even though I was the actual patient and the reason we started going to OCF camp. That could be due to my introversion or my hearing loss, I guess. I think my social status most everywhere is a combination of the two. I feel like if I hear and respond incorrectly to something once or twice, no matter where I am, I must get some sort of social stigma attached to me. I suppose that's why I never really bonded with my cabin-mates when I was younger, or perhaps it was a maturity level thing. My cabinmates would be outside flirting with the boys' cabin and playing whatever ridiculous pop songs were popular at the time, while I was inside having a quiet, mature conversation with one of my counselors. I guess maybe that was kind of weird, because the point of the camp is to forget about all your worries and just be a regular kid. Oh well. That was then. This is now, and I'm going to do the best I can with the gift of the present.

FYI: The photo in the corner is a couple of our kids. We dressed up as "101 Dalmations" for the "movie magic" dinner on Friday night.

ASL and Grammar

Yesterday my boyfriend and I were trying to think of something to do, so we went to the library and looked for DVDs to check out. We ended up getting Sense & Sensibility (with Alan Rickman, yay!) and a sign language DVD which promised to teach you 300 words in an hour! We thought it might be fun to see if it was at all helpful or just odd and dated. At any rate, it's been about a year since I last took an ASL class and I could stand to brush up on my signing. I really don't have much use for it, because most people don't know it. Like I said in my last post, most of my hard of hearing friends lipread, and my hearing has never been so bad that I've needed to learn sign. I'm certain the show that we watched originally came out on VHS, because there were no DVD subtitle options, but you could turn on the tv's closed captioning. They also talked specifically about the law passed in 1993 that stated all televisions should have closed captioning options without having to pay extra for the special device. I was certainly reminded of why ASL is so difficult. Even something as simple as finger spelling is done at a rapid speed by people who know it well, and many signs are similar to one another and are easily confused. For example; "month" could easily be confused with "condom" based on whether you slide your right index finger down the front or the back of your left index finger. This was an actual example used in the movie. I also seem to recall a hilarious incident in one of my ASL classes in which a classmate made this very mistake. Watching the video was a bit of a refresher for me, but 300 words in one hour is a whole lot. One would probably have to watch the video over and over and practice continually to actually learn all 300 words. My boyfriend has decided to at least learn finger spelling. Since we're both novice signers, we wouldn't be spelling super fast, and it would be a way to simplify communication. For example; if someone had said the word "bat" but I had heard the word "mat" ('b', 'm' and 'p' are very similar, even if you're lipreading) he could repeat the word and make the sign for "b."



Signing can definitely help a hard of hearing person, but ASL is primarily associated with the deaf/Deaf community. It certainly isn't essential, and for someone who has not been deaf their entire life, ASL is just as difficult to learn as any other foreign language. I typically compare my knowledge of ASL to my knowledge of French. After taking 3 years of French in high school and one semester in college I only "utulise un petite phrase ici et la, mais mon grammair est terrible." Similarly, I only "use little phrases here and there" in ASL, but the grammar is actually quite different from plain English. This is how I was taught in my classes, by a deaf teacher, no less. "The blue bird flew south" (if I remember correctly) would be something like "south bird blue it fly(+ past tense) it." Although ASL is meant to represent spoken American English, the grammar structure is very different. It's understandable that some deaf or severely hard of hearing people have some grammatical issues when they write. This does not mean that they are unintelligent. I have read some brilliant ideas on forums for the hard of hearing. The meaning of the author is clear enough, but because he or she may not have the same sense of spoken English as a "hearing" person would, their grammar is sometimes way off from what you and I are used to. I see this as an opportunity for me to help those that have a more severe hearing loss than myself. Some day I might establish a career in editing in which I could help these people express themselves in a manner that the mainstream may understand and admire. I hope that some day I may obtain this goal to help others in a similar situation to be their own advocates. ASL is a helpful tool, but unfortunately the "hearing world" tends to hold a "black and white" view. There are hearing people and there are deaf people, and often deaf and hard of hearing people are seen as inferior to their hearing counterparts because they do not communicate in exactly the same way. Likewise, I seem to get a sense of aloofness from the deaf community, and I have heard the same from others who identify specifically with the "hard of hearing" community. Can't we all just learn to communicate with one another in whatever way we can and not ridicule those who do it a bit differently?

Lipreading

Each of the past two nights I have had a meal with a friend at a crowded restaurant and thought, "Man, I wish I knew how to lip-read better!" This is one of the major ways in which I differ from a lot of young hard of hearing people. The reason I see for this is that I had developed language skills long before anyone even suspected my hearing loss. Many young hard of hearing people were born deaf or with significant hearing loss, so they have depended on lipreading pretty much their entire lives. I, on the other hand, although I have been losing my hearing from an early age, had fully developed my language skills before my hearing loss ever became significant. I was a fairly smart kid, so "filling in the blanks" when teachers were saying something wasn't too hard for me, even though I couldn't lip-read. Perhaps I did, and do, lip-read at least a little, subconsciously.

However, my tendency is to place my good ear close to someone when they're speaking, rather than face them. This becomes a little obnoxious for all involved when I start leaning over and going "What? Huh? What?" as I did with my friend last night. Most of my hard of hearing friends insist that you face them, so that they can read your lips. I usually just want you on my "good side." I've had my hearing aid ever since my hearing got really bad, and I do pretty well with it... except in these crowded settings. I eventually give up leaning over and asking the other person to repeat herself, and I miss out on half of what's been said. Last night when we were saying goodbye in the parking lot I finally figured out that my friend was moving to LA for a job she was going to start and had an internship in Aliso Viejo which was about to end. All I had really understood prior was that she was working in Aliso Viejo now and planned to move to the LA area soon.

These are the times I really wish I could lip-read better! "You should take a class," one might suggest. The thing is... I've already taken a class, and it really didn't help. It was a "distance learning" class through Saddleback College. It was held at the senior center down the hill from my house. I was the youngest student by about forty years. Each class it seemed a different classmate would start talking and bonding with me, like I was their "honorary granddaughter" for the week. That experience is actually one of the first major sources of encouragement I had to start seeking out other young, hard of hearing people to connect with. As far as the class itself goes, activities were exagerated and slow and when I tried to practice in everyday conversation the difference was drastic. Practicing with myself in a mirror like the teacher suggested was difficult because of my slight facial paralysis. All of this was so frustrating that I guess I kind of just stopped trying. Maybe I quit too easily. Perhaps I should give it another go; take another class, read a book or try practicing in everyday conversation. My hard of hearing friends who do lip-read always seem to have more of a clue than I do, and they probably catch some side conversations even "hearing" people miss. I want to be in-the-know! I think it's time I gave lipreading another shot.

Bureaucracy and the Quest for a New Hearing Aid

This morning I got up for an 8:30 appointment with my audiologist, not for a hearing test but because my hearing aid is falling apart! Seriously, it's got to be about 8 or 9 years old since I just graduated from college and I got it when I was entering high school. It is literally falling apart. There are cracks along the cover with the electronics inside and the seal along the middle of it is worn out on the edge.

Now comes the process- let's hope the aid I've got holds out for this-the process of going through the bureaucratic and broke state of California so I don't have to pay for it my-poor-broke-college-graduate-sans-employment-self. The whole department of rehabilitation thing is kind of annoying, but then, it's money I don't have to take out of my (pretty much empty) pocket. I've learned something though, since I began working with the DOR... Hiding my hearing loss hasn't been worth the thousands of dollars I could've saved by letting it be known earlier.

I was talking to my voc rehab counselor just a couple weeks ago about how I had "slipped through the cracks." Apparently, during my sophomore counseling meeting, when the counselor suggested I see some school psychologist I really didn't want to talk to... that was the time to let them help. He was probably the guy who could've gotten me "in the system." But no, I refused to see him. Then in community college I worked with the disabilities office. I still denied captioning, but I took the opportunity for priority registration and "voluntary notetakers" (which turned out to be useless), but I apparently spoke to the very person who should have sent me to voc rehab. Alas, this had been coming up in casual conversation (but nothing serious, and no exact directions on getting "into the system") with disabilities office lady as well as my audiologist for a couple of years before anyone ever really clued me in. Once my aunt and I had talked seriously about it (as she has a friend who works for DOR) and my audiologist actually walked across the hall with me to the DOR office, I finally got monetary help for my last year of college.

They gave me a puny Cal State rate per semester for tuition, and at my pricey private university that didn't go very far, but it was $4,000 or so less that I had to take out in loans, so it definitely helped. They also covered books and supplies, though, which really added up, my being an English major and all. To think, they would have covered everything at community college! The money from that full time job I'd been working at during those 2 years could have been saved for times like now, when I find myself unemployed with the imminent threat of loan bills looming. I could really use that money now... and the last three times I had car troubles.

So to any high schooler with a hearing loss or parent of a high schooler with hearing loss I say, "Let the school know! Get yourself in the system!" Whether you want to blend in with the crowd and deny captioning services or not, go see the school psychologist guy you swear you don't need to see because you "do fine sitting front row center." Get yourself in the system and save yourself thousands of dollars! Yes, it is kind of a pain to go through all the bureaucracy, but in the end, free money is free money, (whether it really exists in the government's budget or not, the school will hold the government responsible for payment instead of you). Be assertive! Be your own advocate! Declare your hearing loss! It's part of who you are, whether you like to admit it or not. Don't let yourself slip through the cracks. I learned the hard way.

My Hearing Loss Journey (in more ways than one)

Originally entitled "My Hearing Loss Story OR What I Discovered On My Trip Abroad," I submitted this story to author Shanna Groves (Lipreader) for a project she's working on...

I should have been terrified walking the streets of Dublin alone. I was a 22 year old American woman with no sense of direction and a love of Irish accents, but very little comprehension. Why did I decide to wander the streets on my own? I didn’t feel like I fit in with my classmates. They seemed nice enough, perhaps too nice. Perhaps I was only imagining the condescending tones in their voices, or perhaps I wasn’t hearing the “tones” correctly at all. They claimed that they would be happy to help me if I was having trouble. Still, I felt like a burden, whether I brought my needs to their attention or just sulked by myself because I was afraid to. I felt like a nuisance trying to figure out what everyone was doing for the day in the hopes of joining classmates I hardly knew on their adventures. Most of the things the grad students wanted to do were a little too expensive for me, and when the whole group of grads and undergrads did things together I never felt like I could get in on the conversation. Whether I’m thousands of miles from home or in south Orange County, it‘s a well known fact that people around my age socialize in groups.

Why is this such a problem? Well, I’ve always been an introverted person, but that’s not the point. I felt like I didn’t fit in because I am hard of hearing. How many twenty-two-year-olds do you know who wear a hearing aid? If you’re using more than one hand, you must work for voc rehab or something. Even among my hard of hearing friends I feel different, but then, everyone has their own story… I was diagnosed with a brain tumor four months before my sixth birthday. They say my hearing loss could be due to the tumor, the treatment, or both. I’ve never gotten a strong theory, or a long term prognosis. All I know is that I have been gradually losing my hearing since elementary school. I was a clever kid, and I was fairly good at hiding it when I was younger. However, once I started junior high my parents started to notice that I was missing more.

In junior high I got my first pair of hearing aids, the completely-in-the-ear kind. When I started high school we found that I needed something different, so I tried the behind-the-ear kind. They worked a lot better. However, upon the arrival of my new set of aids, we discovered that my right ear was completely unresponsive. Today I hear alright using a hearing aid in my left ear, but it often picks up everything, not just the sounds I want to hear. Also, having just one ear to work with, I often can’t tell where sounds are coming from. Unless I’m in a quiet room with only one or two other people, all the sounds become one big, jumbled mess and I comprehend very little. However, for a long time I ignored this fact and often purposely put myself in loud, crowded situations purely for the sake of “fitting in.”
I still feel like I never really fit in during high school, but who does? I felt that if I just had some group that I could belong to, then that would be good enough for me. I joined the marching band. I played the flute… rather poorly, but I stuck with it for four excruciating years. I got yelled at a lot, but so did everyone else. I was probably literally “yelled at” more than anyone else because that was the only way to get my attention. I often took this very personally and would go home crying after practices. I was technically a “member” of The Golden Hawk Brigade, but I sure never felt like I “belonged.” I never got invited to do things outside of practice and competitions. Perhaps this was because others thought I was too emotional, or too self-absorbed. Regardless of what others thought, I never felt like a part of the group.

Now, I function fairly well as a “hearing” person with my aid in, but in a large, chatty group I’m unable to pick out a bit of conversation to respond to. It’s somewhat awkward to single someone out for a side conversation when you don’t know anyone very well. This is true no matter how old you are, whether you’re hearing, deaf, or hard of hearing. Yes, there is a difference between the three that I am very keen to point out, but we’ll save that for another time. So how did I solve the problem of “not fitting in” and “not being able to hear in a large group“ while traveling in Europe? Perhaps you might say I went about it the wrong way, but this is what I did. I started venturing off on my own when I had free time. I explored the cities by myself and discovered a newfound confidence. Maybe this wasn’t the smartest idea, and perhaps not the best for my social life, but it worked for me. While wandering the streets alone I didn’t have to worry about “fitting in” or “keeping up with the group.” Without meeting times and places I didn’t have to worry about getting lost. People are typically very friendly, especially in cities where the main industry is tourism. If I got lost I could ask someone where to go, and if I misunderstood them and went the wrong way I could ask somebody else or pull out my map and figure it out myself. I went off adventuring on my own and I was fine. From this experience I gained a sense of independence that I’ve never experienced before or since and discovered that even as a hard of hearing person I don’t have to feel like a burden to anyone. I can make it on my own.

Connections

After an afternoon reconnecting with an old friend I have been inspired to create this blog. This friend is 3 decades older than me, yet I often feel like I share a deeper connection with her than those within my own cohort. As the title of this blog and this entry might suggest, we both have a hearing loss. Among the miriad frustrations we discussed today; captionists/court reporters, movies, socializing, accents, transportation, dating, family and more. I realize that each individual's hearing loss journey is different, and that there are plenty of very compassionate, understanding people with "normal" hearing. However, there are certain things that only another hard of hearing friend can truly understand, whether they were born deaf, lost their hearing as they got older, developed a hearing problem due to a certain disease or illness, or were simply exposed to too much noise. Along those lines, there are also things I don't expect a 54 year old woman to understand completely about my generation, whether she's on facebook or not. So this shall be a place for me to rant about my experiences, observations, musings, and frustrations as a young adult with hearing loss. I hope there are some who read and can relate whether they be 20 or 60, whether they refer to themselves as hard of hearing, hearing impaired, deaf, Deaf, or are simply a close "normal hearing" friend or loved one of someone who does. So here goes my first post on this new blog. The second shall be a reposting of a story I've already shared via facebook. It relates to a recent trip I took to Dublin and London and the way I decided to face certain social challenges whilst on my trip abroad.